This is Michele. As long as I can remember, I have always believed a healthy baby is a miracle. Now I am seeing this first hand and feeling it personally. Our baby girl is so precious and I just want to be able to hold her and take her home to be with her big sisters. She is taking baby steps with improvements, which I hear is very typical. It's just hard bc we want her to be better now. :) Her heart and lungs r improving and her kidneys seem to be functioning well. Her biggest thing now is getting rid of the fluid in her chest, abdomen, head, and face. She just looks so puffy and this can't be comfortable. :( We r praying this fluid will go away, that God will put His hand on her little body and she will start getting rid of more of this fluid. Still no answers on the cause of all of this. They know she has a condition called hydrops, but all that means is that she has a collection of fluid in more than one area. Josh actually asked the doctor about this at my ultrasound appt on Monday, before all this even started ; Avelyn was born on Wednesday. More on this story later...as we feel God led us to where we could get the best care possible, as quickly as possible to help out our baby girl. There a whole wide range of causes for hydrops and they don't know in Avelyn's case what it is yet. The doctor's would really like to know, as would we, especially if it helps her care, but as long as they r able to treat her symptoms, she is improving, and she makes a full recovery, that is great with me.
For those of you that have been waiting for updates, we apologize. Yesterday was full of people (staff) who just happened to come in pretty much one after another to explain something, give us an update, or provide another service to help us. We talked to a neonatologist, nurse practitioner, cardiologist, Avelyn's nurse of course, social worker, clinical genetics contact, research genetics liason, and the PaCT team (who helps us if we need assistance with her coordination of care and other things)...that's all, I think.--All of this while still finding time to eat, pump, see our baby girl, see our big girls :) and recover from a c section. Just not enough time in the day... All the staff has just been wonderful, which makes a difficult situation easier to handle. She is in good hands, which we r very thankful for.
I am headed down to see Avelyn now. Will only get to do this super early like this while I am in the hospital, so want to take advantage, as this is only for tonight and tomorrow. Then we will be making trips up here to see her. They say with her symptoms it is likely a long journey ahead.--God is able and we r praying for a quick and full recovery...that God will heal her. Thank u all SO much for your texts, emails, fb messages, etc. -- Thank u for your encouragement, help many of u have offered in all kinds of ways, concern for our new baby girl, and most of all the prayers bc that is the main thing we need right now!!
Love and Hugs.